For Patients

Feeling Blessed

Patient: Heidi Garcia
Diagnosis: Stevens Johnson syndrome
Sight Restored: 2013

SJS survivor Heidi Garcia with her daughter

Heidi Garcia (pictured with her daughter) was extremely proud of her track record of never missing a day of work as a sales representative for McLaughlin & Moran, Inc., the Anheuser-Busch distributor for the state of Rhode Island. So, in April 2012, when she did call in sick, something was obviously very wrong. What Heidi initially thought was a bad case of the flu turned out to be something much more serious – Stevens Johnson syndrome.

On Easter Sunday the decision was made to put Heidi into a medically induced coma.  A month later when she woke up from the coma, she was blind and had burn scars all over her body. She had developed keratinization in her eyes, a condition in which cells in the eye convert to hair and nail cells, which scratch the delicate cornea with each blink. But thankfully she was alive.

In the coming months, Heidi had twelve operations on her eyes – two amniotic grafts on each eye and surgeries to transplant mucous membranes from her mouth to her eyes. The procedures helped her regain about 50% of the vision in her right eye, but she was still mostly blind in her left eye.  “For the first year, I didn’t want to deal with anything or try to find help – it was just too overwhelming,” she said.

Finally, when Heidi felt strong enough to look for better answers, an internet search led her to Boston Foundation for Sight (BFS). “My local eye doctor had never heard of BFS, so I travelled to Mass Eye and Ear for a consult with Dr. Jacobs.” Heidi learned that she was a good candidate for BostonSight® PROSE treatment, and in January 2013 successfully completed her treatment and went home with customized PROSE devices.

Throughout her journey and despite what she has endured, Heidi feels lucky. When she was in the hospital and blisters started forming over her entire body, her employers, Terry Moran and Paul Moran, would come to visit with her. When her fever reached 106 degrees and no one knew if she would live or die, the Morans were there to support her and her family.  They even set up a trust to care for Heidi’s eight-year old daughter should the worst happen. Once Heidi learned about PROSE, “they would drive me to BFS and helped pay for the treatment. They treated me like family and not just another employee.” Additionally, Heidi has support from her family. “I want to thank my sister, Annah Rodriguez, who was there every day and never left my side.”

Heidi attended SJS Care Week, and she brought some great news along with her – a proclamation declaring August SJS Awareness Month in Rhode Island! She uses her devices every day.  “When I remove my devices, I cannot open my eyes at all and am in agony. Without the devices I wouldn’t be able to leave my bed. I wouldn’t be able to function – that would be my life.  I am so grateful that BFS is only 45 minutes from my house; I feel blessed that I was able to find them.”

Download a PDF of this story.